My IUD Helped Treat My Endometriosis. NY Lawmakers Want to Make Them Harder to Get

Image via Getty.
Image via Getty.

I remember screaming when I first saw the blood, but I couldn’t hear my own scream. I had never seen that much blood before. It was a pool the size of a beach ball soaking into my sheets by the second. I jumped out of bed, and as soon as I stood up, I felt more of it pour out of me.


I was fourteen. I remember the date, because it was Friday the 13th (lucky me!). I weighed about a hundred pounds and felt like I had just lost half of that weight in deep red blood. Once the shock dissipated, the pain hit. Like someone had kicked me with a steel-toed boot in the stomach, I bent in half and fell to the ground. That’s when my grandmother ran in—apparently I had made noise when I screamed—she asked me how I got pregnant. She thought I was having a miscarriage.

I wasn’t. I was having the first of what would be ten years worth of life-crippling periods. Periods that would turn my face pale and make the world spin around me every time I stood up. Periods where the pain would permeate every inch of my body to the point where I forgot what pain was. And I mean that quite seriously—for one example out of many, I dislocated my knee in 11th-grade gym class and didn’t even notice until someone pointed out that my knee cap was on the side of my leg. My brain had stopped knowing how to process the sensation of pain.

As an athletic high school girl in a family full of brothers and uncles, I wasn’t going to tell anyone about this. I grit my teeth in silence while three, four days a month I was in so much pain I couldn’t see straight and losing so much blood that I’d have to pop iron pills like they were breakfast cereal. Then I got to college, and, steadily, those three or four days a month turned into five or six days. Then it was a week and a half. I went to a doctor about it, once, and she told me to try yoga and Advil. I laughed in her face and didn’t go back.

I graduated, and tried to hold down a job when this nightmare stretched to two weeks out of every month. I was a rehearsal pianist, and in between songs in the studio I would crumple to the floor behind the piano and curl up there until my next cue. Some days I couldn’t even get out of bed. Finally, I ended up in the ER on a morphine drip, and even morphine had barely any effect. I knew I had to do something, so I resolved myself to go to as many doctors as I needed until someone gave me an answer.

Four doctors later, I finally landed in the office of an endometriosis and pelvic pain specialist. Lo and behold, I had endometriosis covering the outside of my ovaries.

Quick explainer: Endometrial tissue is the tissue that lines the uterus, which bleeds and sheds every month during menstruation. With endometriosis, your endometrial tissue escapes the uterus and clings to the outside of the uterus, ovaries, or other organs in the pelvis (or worse — it’s been found even as far north as the lungs). And like the endometrial tissue inside the uterus, it bleeds on the same cycle every month. In short, it’s quite possibly one of the worst torture devices the human body has ever created. And because mine had gone untreated for a decade, the constant cramps had caused me to develop a pelvic floor spasm as well. The endometriosis would have to be removed surgically, the existing lining of my uterus would have to be scraped clean, and I’d need to get an IUD inserted to stop it from growing back. A hormonal IUD—which prevents pregnancy, in part, by thinning the lining of the uterus—was the only thing that would give me any semblance of a normal life.


Birth control is under siege in this new administration. For the last seven years, many women enjoyed nearly unfettered access to affordable or free birth control. The 10 percent of women who have varying degrees of endometriosis (yes, 10 percent, or one in ten, which means that if you have more than 10 female friends, at least one of them has this and has probably been suffering in silence her whole life, just like me) were able to treat their chronic disease without judgment or having to defend themselves. It crushes me to think that era may be at an end, and we’ll be back at square one. It makes me sick to realize that my employer could get to choose if I can or cannot have insurance coverage for a medicine that I need in order to be healthy, because it may be against their religious or “moral” beliefs. It makes me livid to think that anyone could believe they have the right to make this decision for me, without knowing a thing about my medical history, or the dozens of other reasons women might be using birth control to treat medical conditions. In fact, many women with endometriosis are infertile or will have an incredibly difficult time getting pregnant, so birth control is the farthest thing from just contraception for us.

But even if birth control is being used solely as contraception, if your stance is “pro-life,” you should be pro-birth control access. Last year’s abortion rates were the lowest they had ever been since the Roe v. Wade decision in 1973. The Guttmacher Institute’s authoritative study, whose results were released this past January, showed that the abortion rate in nearly every state has declined significantly since the Affordable Care Act (Obamacare) was passed in 2010. They can reasonably conclude that better access to a comprehensive slate of birth control options—particularly for women in Southern and Western states, which saw the biggest declines in abortions—helped people prevent unplanned pregnancies and contributed significantly to the decline in pregnancy termination.


The Comprehensive Contraception Coverage Act (CCCA), which would require that all health insurance plans cover all federally-approved contraception with no co-pay, is being held up in our legislature by Republicans. The Reproductive Health Act (RHA), which would simply bring our New York State abortion laws up to code with the federal standard of Roe v. Wade, is in the same spot. But it’s not just Republicans holding it up—the “democrat” members of the IDC (Independent Democratic Conference), who often align with Republicans in the Senate despite running on Democratic platforms, refuse to bring these to the floor for a vote. The IDC claims to have a progressive, pro-women agenda, but that is nothing more than a facade built to keep them in good standing with their voters while rubbing elbows with conservative colleagues. They are politicizing women’s bodies and using it as a tool to advance their own careers.

It is this politicization of women’s healthcare that makes 14-year-old girls think they have to hide a serious medical condition from their parents, because everything they’ve heard about it says it’s dirty, immoral, or wrong.


It is this politicization of women’s bodies that keep young women fighting for their lives with doctors who don’t know about common reproductive diseases, because their research doesn’t get grant funding out of fear of political backlash.

It is this politicization of women’s reproductive systems that allows pregnant citizens to suffer and die because their government does not trust them to make their own medical decisions.


It is this politicization of women’s bodies that will perpetually keep us from true equality. Until our lawmakers give us the freedom to control how and when we receive medical treatment, we will always be second-class citizens. To our IDC lawmakers: Woman up. Keep your promises. Stand with women, or stand down.

Danielle DeMatteo was on the organizing team for the Women’s March on Washington: New York City Chapter and has since taken on the role of Vision Committee Chair in their new organization, Forward March NY. She’s also a writer and producer of SheNYC Arts, and believes that elevating women’s voices in the arts can help fix all the world’s problems.


Mike Pipper Super GIF Enthusiast

My Sister-From-Another-Mister has endo, that even a hysterectomy hasn’t been able to help. Even without the equipment it STILL comes back and it’s a never ending struggle to be taken seriously by insurers (who think she’s an addict from all the meds her doctors prescribe) and even pain management specialists, most of whom have no experience with endo.

It’s maddening, and I certainly couldn’t deal with it if I had to. She’s the strongest person I know, and she hates that she has to be so just to make it through the day.